LOS ANGELES -- When Chiaki's son was diagnosed with schizophrenia, she longed for a support network to help her find care for her son. As a first-generation Japanese mother living in America, navigating the U.S. health care system in an unfamiliar language and culture left her feeling isolated.
When Chiaki tried to apply over the phone for Social Security benefits for her son, an employee hung up on her, rather than offering an interpreter when they hit a language barrier. When her son's case worker sent him to live at a sober living home, rather than one for adults with mental illnesses, she tried to point this out and was ignored by multiple Los Angeles County offices, who cited patient privacy laws. It was only after her son wasn't properly provided his medication and his fellow patients beat him that he was moved.
She then sought support from a National Alliance on Mental Illness support group in the South Bay, but the meetings she attended were all in English.
"I was frustrated and truly had such a difficult time with the language and culture in dealing with my situation," Chiaki said through a translator. "And I really wanted to be able to share my thoughts with other Japanese people in the Japanese language."
So in 2012, Chiaki formed a Japanese-speaking family support group under NAMI South Bay with support from the affiliate's board members.
Over the past 10 years, it has served as a space for members, many of whom are first-generation Japanese mothers, to share how their kids are doing, exchange their experiences and learn how to talk within their families about mental illness. Five of the group's members spoke to The Times about their experiences, four through a translator and whom asked that only their first names be used to protect the identity of their children.
Teruko, 69, who joined after her daughter was diagnosed with schizophrenia, regards the support group as a "study group," an acknowledgment of how they all learn from one another.
"We come to the group to talk about different ways of approaching things," Teruko said through a translator. "It's something of a learning experience for all of us."
The U.S. mental health treatment system has long been a fractured maze for patients and their families to navigate, but the experiences of those in Chiaki's group speak to added barriers for diverse communities.
Ayumi Omoto, mental health program manager at Little Tokyo Service Center, often receives referrals from Chiaki's support group. Omoto said there are few services for Japanese-speaking people, especially for those on low or fixed incomes.
The majority of mental health professionals are white — 5% of psychologists identify as Asian, while 86% identify as white — and Omoto said without access to culturally responsive care, people may turn to unhealthy coping mechanisms that may not be healthy, like substance abuse.
Some might try to find services at English-language clinics, but that doesn't mean they will get the help they need.
"Because [of] stigma…it's hard enough as it is for people to access services in a language or culture that they're comfortable with," Omoto said. "So it's probably even more unlikely that they're gonna go to mainstream services."
For Chiaki, who emigrated from Japan to the U.S. in 1986 when her husband's company assigned him overseas, seeing her son go through hospitalizations and living arrangements made her realize how different the U.S.'s health care system is compared with Japan. For example, state and federal privacy laws that many health care providers strictly interpret often mean parents aren't involved in their adult children's care.
"In Japan, they try to involve the family in the care of the patient," Chiaki said. "Whereas in the U.S., it's much more focused on the individual wanting to seek help."
Yoneko, 88, of Culver City joined the group about six or seven years ago and faced similar challenges with her daughter and the hospital system. Yoneko said her daughter hears things and often talks to herself, in Japanese and in English.
One day, Yoneko's daughter suffered a breakdown and drove herself to the emergency room with Yoneko's car. After a day with no contact, Yoneko asked her daughter-in-law to take her to the hospital where she found her car in the parking lot, door unlocked on the driver's side and keys left in the ignition. When she asked at the front desk where her daughter was, they couldn't say.
She was told she'd have to wait for her daughter to contact her.
All Yoneko could do was take her car and return home to wait. Her daughter finally called within the next day and informed Yoneko that she was several miles from home in Encino.
"This is just unthinkable in my culture, that you can't even tell your own family the whereabouts of the patient," Yoneko said through a translator.
As Yoneko attended Chiaki's meetings, she listened to other members discuss their experiences and learned about the options available to her and her daughter. Each month, Chiaki and others in the group share resources in Japanese to help people determine what's best for them and their family. About eight to 12 people participate every month.
But in the beginning, there was only one.
When Chiaki hosted her first meeting of the Japanese-language support group, one person showed up. They had seen a flier Chiaki posted at a local mental health clinic in Gardena.
As Chiaki began to advertise more, the group grew. Meetings moved from Chiaki's house to the library at Harbor-UCLA Medical Center to the L.A. County Wellness Center across the street from Harbor-UCLA hospital in the South Bay. During the pandemic, the support group moved its meetings to Zoom, and Chiaki sometimes gathered those unable to attend the meetings online for lunch at Mitsuwa Marketplace in Torrance, where there's an outdoor patio.
Chiaki also began building a small library for the support group, compiling books, magazines and DVDs from Japan about mental health for her members to borrow. Since 2012, over 100 people have reached out to Chiaki. And even though Chiaki's first participant eventually moved to Japan, the two still keep in touch.
One of the group members, Masako, 88, joined eight years ago after she spotted Chiaki's ad in a local paper. Her son lives at a board and care home, a type of affordable supportive housing for adults with serious mental illness.
A doctor stops by once a month to check on her son, who has been diagnosed with schizophrenia, but Masako isn't told much.
"I thought that maybe I [should] push a little more," Masako said through a translator, "but I don't speak English, so I can't do it."
Her hope in attending the Japanese-language meetings was that "maybe if I am able to speak to other people in Japanese that I may be able to hear about what other people experienced and get more information," Masako said.
Getting information so people understand mental health conditions and learn how to advocate for themselves and their family members is one of the most important aspects of an effective support group, said professor Tamar Heller, head of the Department of Disability and Human Development at the University of Illinois.
Heller studies NAMI support groups and has found that participation can result in improved relationships within the families. These support groups, Heller found, also help families address the stigma around mental illness.
But what has amazed Heller the most is seeing participants cite giving support to other families as another positive benefit of being in a support group.
"It was not only getting support from others…but if they felt that they gave support," Heller said. "And that goes with a lot of the literature about meaningfulness in life and giving to others and feeling that they were able to help other people as well."
Heller said still, support groups may not always be the right fit for some people. For example, if a participant is deeply anxious or depressed, hearing about a fellow group member's struggles might make them feel worse.
But among the many positive aspects of being part of support groups is the feeling the safety of knowing there are people who understand what you are going through.
In Chiaki's group, members find comfort in a support group that speaks the same language and carries similar cultural values. There were unsaid things that everyone simply understood, like how difficult it is to talk about mental illness among one's family and community.
Naomi Mizushima, who is a second-generation Japanese American and has been a member of Chiaki's support group since 2020, recalled pretending that nothing had happened when her eldest son, Eutah, attempted suicide at 16. He was admitted to the hospital, and the family saw a psychiatrist only once. After Eutah was discharged from the hospital, they rarely talked about the suicide attempt within the family or with anyone else.
"It was kind of like a shock, like 'Why is he doing this to us?' type of thing," Naomi Mizushima said. "It was beyond my understanding as to why he would do that. I remember thinking that I can't talk about this to my sisters or to my family. We, as a family, never talked about any issue of mental health."
Eutah Mizushima said he remembers how tough it was to have those initial conversations, especially to his father who is first-generation and whose primary language is Japanese. He struggled to find the right vocabulary to explain his emotions to his parents.
Even later, when the Mizushimas participated in family therapy sessions, Eutah Mizushima said the Japanese-speaking counselor also didn't really know what words to use.
"As a high-schooler, parents might feel a bit more responsibility, or even authority," Eutah Mizushima said. "Their child is still young, still a minor. It was very much a one-way conversation. It was very hard to express my thoughts and feelings, and honestly at that time, I didn't really understand it myself."
Wanting to connect with his mother about what he was going through, Eutah Mizushima suggested she educate herself on mental health "since whenever I spoke to her about it, it was very emotionally heavy," he said.
"She, to her credit, started to read articles and [watch] videos…my mom, when she starts something, she really goes all out," Eutah Mizushima said.
Naomi Mizushima dove in, joining NAMI in 2020, and not only attending meetings but also getting certified to conduct mental health-focused workshops. Through her volunteer work and experiences, she realized how cultural stigma around mental illness was overlooked, yet so prevalent among the Japanese and other Asian American communities.
In March 2021, she founded 1000 Cranes for Recovery, which combats stigma in these communities through education and events.
"In the Japanese community, social status, appearance and reputation is a major factor in regards to success and acceptance," Naomi Mizushima said. "If you have a disability, for instance, you yourself are not just being affected. It can affect the entire family and the family's circle of friends. It's very much a group-minded society."
One of Mizushima's events is her 1000 Origami Cranes for Wellness workshops, where participants fold 1,000 origami cranes for mental wellness. It's based on a Japanese tradition where community members unite to fold 1,000 origami cranes to wish for somebody's wellness. It's a symbol of hope, although it is typically used for physical illnesses.
When Mizushima explained at a recent 1000 Cranes for Wellness workshop in Orange County Buddhist Church that the folding of origami cranes is for mental wellness, many Japanese American attendees were shocked. Even more so, when Mizushima shared about her son's suicide attempt.
"Because normally Japanese or Japanese Americans do not even talk about that because of the shame, right?" Mizushima said. "But some of them approached me later and said 'it's very important that we do talk about that.'"
These discussions on language and culture are common during Chiaki's support group meetings as members talk about what they can do to support their children.
Chiaki said since founding the group, she's changed on how she communicates with her son.
It's common in Japanese culture, she said, for parents to be strict in enforcing manners and tradition. There is a tendency to discipline children, but she is now trying to offer more praise to her son.
"I changed a lot," Chiaki said. "I don't criticize my son as much anymore and instead I say 'Good job' or 'You are doing very well.'"
Reflecting on the past 10 years, Chiaki, who no longer serves as leader but continues to facilitate a monthly support group, said the group's growth shows how necessary this support group is. She said it's not just her who has contributed to the support group; it's the power and energy of the members that have helped make it what it is today.
"I'm one of the family members," Chiaki said. "So I'm happy that we can share and care for each other."
She added, "I hope this group continues to exist. [Anybody] who has a difficult time…can come here."
